Tuesday, April 26, 2016

(Not) Born This Way

(To those who receive this via email, this essay contains a video which can be viewed on the Wheelchair Kamikaze website – click here)

Later in May I’ll be marking the 13th anniversary of my official diagnosis with Multiple Sclerosis. Believe you me, the date won’t be punctuated by any festivities, but more likely with a shake of the head. Thirteen official years with this motherfracker and it’s still a shock, despite my mounting disabilities and the indignities that go with them. At this point my healthy days are becoming a distant memory, so much so that many of the details of my way-back-when life have taken on a dreamlike quality, as if they are no more than the ethereal inventions of a somnolent mind.

But no, indeed there was a time when I was healthy, and yes, I did actually do all of those things that are stored in my memory banks. Thing is, looking at me now, except for the unfortunate developments of the last 13 years, nobody could ever guess at the experiences that shaped me. This certainly wasn't true when I was well, when my outward appearance most definitely reflected many of my life's experiences, my likes and dislikes, and, I think, something of the essence of my soul. Though I wasn't a peacock, I did take pride in my appearance, and often wore a rotating selection of the antique wristwatches and jewelry (some of the jewelry dating back to ancient times) that I passionately collected. Yes, I'll admit to a touch of vanity, but mostly I just wanted my outward appearance to be a natural extension of the person wearing the clothes.

One of my favorite pastimes is people watching, and part of what makes that activity so endlessly fascinating is imagining the life of each person spied, constructing a momentary narrative of their past, present and future. Writ large on many folks is an imprint of their lives, of dreams and aspirations filled or failed, of triumphs exulted and disappointments swallowed. That sly looking older gent, snap brimmed hat worn at a jaunty angle and eyes all a twinkle certainly had his adventures, quite likely a few too impolite to be told in public. Was he CIA or Mafia, and is there really a difference? That fashionably retro young lady, trying so desperately to come off cooler than a Frigidaire, masking not long ago awkward teenage years and a mass of insecurities still harbored inside, her wannabe Audrey Hepburn exterior a veneer for the Olive Oil heart pumping within.

Most of us project who we have been and who we want to be through the image of ourselves we construct for the outside world, some more consciously than others but almost all having their tells. My current wheelchair bound, physically decrepit state serves as the ultimate unwanted camouflage, to my chagrin. Spastic, atrophied limbs and my mechanical means of ambulation paint a picture likely to overwhelm any I might otherwise want to project. When I first got the chair and was less disabled I made it a point to try to be the most fashionable gimp possible, choosing clothes and accoutrement that screamed “personality”. Now, though, forced by the ravages of my illness to wear garments picked far more for practicality than self-expression, my outward appearance speaks primarily of my medical predicament and not of the life that preceded it.

It’s strange how invisible one can feel when sitting in a hulking 350-pound mechanical monster. The simple fact is that most healthy folks don’t spend much time contemplating the person and personality sitting in the wheelchair, preferring to devote their thoughts instead to less morbid topics. Thinking too hard about the person in the wheelchair might provoke some rather unpleasant truths, including the disturbing reality that with a single stroke of bad luck that person in the wheelchair could be you. Truth be told, back when I was among the healthy I was one of those who didn’t give much thought to folks in wheelchairs or scooters. Though I’m generally an empathetic guy, I don’t think I ever took the time to contemplate life through the eyes of the disabled, or imagine the path that brought them to their current state. It was much easier and less troubling to simply assume that they had just been born that way or had in some other fashion materialized in that wheelchair fully formed, like a pod person from The Invasion of the Body Snatchers. Dummy.

Well, for the record, I’d like to state that I was definitely not born this way. This summer it will be eight years since I was forced into my first wheelchair, and about 11 years since I exhibited my first blatantly obvious outward signs of disability. The life I lead before MS intruded upon it was varied and colorful, filled with experiences ranging from the ridiculous to the transcendent. And some that were transcendentally ridiculous.

At age 17 I worked for a dirty magazine, at 23 I was the lead singer of a punk rock band, at 30 a creative cog in a large buttoned down multinational corporation (yuck), and at 36 found myself heading up the DVD production department at one of the foremost music/TV/video production facilities in the world.

I played an important part in the making of over 300 mostly music related DVDs, and have a platinum record on my wall and a listing on IMDb.com to prove it. And even though that all sounds interesting in the telling, I never found much satisfaction in my work life.

I was a habitual night crawler, carousing past dawn more times than I can remember or count. To this day I’m rarely in bed before 3 AM, and strive to be blissfully ignorant that there are two 10 o’clocks in one day.

I suffered several broken hearts, but also broke a few along the way (sorry for that). I learned that although the faces and circumstances of each heartbreak differ, the heart tends to shatter along the same fault lines every time. And that after each heartbreak, which I neurotically nurtured, I was only as alone as I wanted to be.

I was almost murdered (twice), suffered a detached retina after hitting a really big guy in the fist with my eye, and once unceremoniously projectile vomited at my boss’s table during a raucous office Christmas party. Oops.

I drove fast cars way too fast (how else to drive them?), bet on fast horses that mostly turned out to be not quite fast enough, and fasted on Yom Kippur.

I shot video professionally while flying in vintage war planes, police helicopters, hot-air balloons, and even the Goodyear blimp, twice.

I jumped out of an airplane.

I came face-to-face with a 10 foot bull shark while snorkeling over a reef a few miles out in the Atlantic off the Florida Keys. I wish I could say that I faced the moment with steely resolve, but in plain fact I tried my best to run back to the boat that brought me there, proving once and for all that I am not the son of God. This did nothing to ingratiate me to my then girlfriend, left behind in my panicked wake. Please see the note on heartbreaks, above.

I won the lottery (for thousands, not millions), shot a hole-in-one, and came in first in an online poker tournament.

For a while I swam a mile every day, slicing through the waters in a meditative state engendered by the womb like environment of the pool and the repetitive physicality of the exercise. How I miss that.

I made friends with some very special people, relationships that matured beyond mere friendship to become family. These precious folks are an integral part of who I am and how I view the world. And I owe most of them long overdue phone calls.

I married an angel.

At times I've been down to my last dime and at others have been flush with cash, and learned that what my grandmother used to tell me about wealth when I was a kid was true: rich or poor, it’s nice to have money.

I could go on, but I’m sure you get the gist. I realize, too, that my becoming disabled has afforded me some extraordinary experiences that I otherwise certainly would’ve missed, and not all of them involve unpleasant medical procedures. Through these pages I have touched and been touched by people from all over the world. My MS “get out of work free” card gave me a reprieve from the working world, and allowed me the freedom to dust off parts of myself that had been left neglected for decades. I’ve made some very special new friends who are in one form or another members of the MS club. I owe most of them phone calls, too.

Despite the fact that I am, of course, still the sum of all of these parts, as my disabilities mount they increasingly pirate the persona the public at large sees when I venture outside my apartment. It’s impossible for them not to, as my wheelchair has no invisibility button, and my withered and weakened limbs can’t be camouflaged by even the most snappy pull over shirts and elastic waisted pants. I know I'm not alone in these feelings, as I sense some of the same frustrations in the knowing glances and nods exchanged with other wheelchair users that I pass on the streets of New York. Funny thing is that some of the most interesting people I’ve ever met are fellow wheelchair jockeys, most of them imbued with a quiet wisdom and sense of the absurd accrued by enduring the foibles of our shared tribulations.

Indeed, most of us in wheelchairs were not born this way, and if that fact makes some members of the healthy world uncomfortable, well, sorry for that but get over it. Although a quick look at me may no longer reveal the kernel of who I am and where I’ve been, I'd be happy to share the lessons learned and laughs picked up along the way with one and all. I am much more than this faulty and misshapen body; there's still a person in here filled with all the simplicities, complexities and idiosyncratic contradictions I've collected all these years. To find out what lurks within requires but one magic word. Hello.

Writing this essay brought to mind a wonderful song written and recorded by John Prine in 1971 that touches on many of these same themes, though in the context of old age rather than disability. It’s one of the most poignant songs I’ve ever heard…

59 comments:

Marc, you are a brilliant writer. I identify with most of what you have to say. Although I should read these posts with disgust, I don't. They make me laugh, cry, wonder, worry, give pause, give thanks, marvel, imagine... A whole host of emotions. But they do not make me sad.

Why is that, do you suppose?

Thank you for gracing us with these short stories. This writing, one of your MANY talents, is appreciated and admired by countless numbers.

Hi, thanks so much for your comment. I have no idea why my posts seem to touch emotional chords, other than the fact that I've always experienced my own emotions quite intensely, so perhaps this makes it easier for me to convey them to others. I only wish I had been able to tap into this talent (if that's what it is) before I got sick, but I suppose that maybe I'm putting it to better service now that I am sick, which is one of those weird cosmic twilight zone things to ponder while staring at the ceiling at 4 AM.

Anyway, I'm glad that my posts don't make you sad, as that's certainly never my intention. Some find inspiration in my work, but sometimes expressing difficult emotions, as uncomfortable as they may be, is a catharsis that can be inspirational in itself, just through the unburdening and sharing of all the conflicting emotions that come with this disease. Just knowing that you're not alone in this storm of emotion amidst physical decline can be hugely helpful, and believe me, the health flows both ways…

I do love reading your blogposts. Today your post hit a sore spot, and that song just gave me the rest. I cried my eyes out. I've been stuck in a wheelchair for just over 3 years now. I've never been more isolated. It's as you said: One day you're you, and the world sees that, then with time the only thing that others are aware of it that thing you're sat in. They see the illness, the condition, but not the person. I often have to remind people that my name is not "Wheelchair" or "MS", but the message rarely gets through.

You're welcome, and thank you for sharing your thoughts and experiences. It would be great if the world was a better place for those of us with disabilities, but human nature being what it is I think will have to put up with the status quo for quite a while. Said fact is that it took my own getting sick to "enlighten" me as to the predicament of others in similar situations. I guess it takes one to know one…

As a fellow Primary Progressive victim, I want you to know that you are cared for by many of us that haven't had the distinct pleasure of meeting you in person. Your writing touches my soul and reading your stories reminds me of quite a few of my own. This diagnosis has brought some of the most amazing people into my life. Please don't stop sharing...........

I always look forward to your posts – they are brilliant! The John Prine song had a special significance for me. I have recently began living in an assisted living facility where there are many elderly people. The song brought home to me the fact that they are all people who had full lives and are deserving of recognition and respect. Thank you.

Melinda, I'm sure adjusting to your new living situation must be difficult. There was a documentary on HBO a few years back called "Room 335", about two college students who take up residence one summer in an assisted living facility. Very touching film, showed how human beings can bond despite differences in age, circumstances, ethnicity, etc. if only given the chance. Don't know if you have access to any of the streaming services, but recommended viewing if you do. I wish I had more to offer, but do know that there are people out here who care…

Hello MarcI love your writing, your raw honesty, your vivid presence in the words.I also am an MSer and I feel deeply moved. I was fortunate to be able to turn things around and what started like a verdict of doom, became a challenge to a rebellious and stubborn girl that I was able to overcome and turn around. Bc of that I read your words, sense you, and feel guilty for my fortune. I became a therapist and medical coach in order to support and help others through this deck of cards, and when I tried to join a support group I was rejected bc I was doing to good and the leaders of the group didn’t want to make the others "uncomfortable with my presence." That to me was unbelievable. I don’t really know what helped me. I think I refused to believe what they told me, their statistics and their predictions, and maybe just as the placebo effect, was able to recover completely (mostly). But I don’t forget for a moment what could have been and has actually been to so many, you and some of my dearest friends too. I salute you, feel bad for you, feel guilty for being so fortunate and yet, I want to tell you how I love your moving writing. Thank you for sharing with honesty and also for that beautiful song.Shuli Lando

Thanks for your comment, and really, there's no reason in the world for you to feel guilty because you are doing well. A good attitude does go a long way, although for a lot of people attitude alone doesn't change the course of their disease. MS strikes each individual differently, and from the sound of it it seems that you are trying to do a lot of good with the good fortune that has come your way. No apologies necessary.

Your writings always inspire me. Especially when they say nothing can be done. Try 100,000 units of D3 per week (new study with drs and testing), or await one of the new drugs coming out. Hope or hype? Still walking with a cane, but progressing

There are indeed advances being made in the study of progressive MS. Unfortunately, they can't come fast enough, and this flavor of the disease was ignored for way too long. As far as the D3 goes, you're talking about Biotin, which has been shown in studies to be effective in about 15% of progressive MS patients when extremely large doses of pharmaceutical grade product is used. This is not the same as the D3 you can buy over-the-counter, but there are some compounding pharmacies that are making the drug in the meantime. Just read a study done by the French pharmaceutical company testing this compound, which looks very positive, even though, as I stated before, this is no wonder drug. I wrote a blog post about this last year, which you can find by searching "Biotin" using the search box in the upper left-hand corner of the blog page. Thanks for your comments…

Marc I have not written to you in awhile. I have been kicked to the curb so to speak. Accused of having Alzheimer's Disease which I do not. Just………PPMS. Accused of having anxiety which MS Clinic blamed for tinnitus and numb tongue. Not so……..Current MRI revealed pituitary cyst? And I spent the money for a blood work up on Lyme disease……I reside on a belt of lyme sufferers in BC. Please do not post. Have you heard of any other MSers with a Pituitary cyst? My first husband succumbed to acromegaly…..a pituitary tumour at age 54. I suffer from anxiety now and it is global. The naturopath said Lyme disease may contribute and a pituitary cyst may contribute. THANK YOU FOR THIS SITE……….. REGARDS M

I have all kinds of endocrine issues also, so I very well know how debilitating they can be. Certainly, a pituitary cyst or micro tumor can create all kinds of problems, since the pituitary is the master gland that controls the production of most of the hormones in your body. Have you seen a very good endocrinologist about this? Definitely something you should pursue, as hormone supplementation may help alleviate some of the symptoms you are experiencing. Wishing you the best of luck…

Hello Marc I do have a good endocrinologist. In fact, he has you phone him to get result and discuss. Imagine that, a doctor who actually talks with you? Do you suffer rom anxiety, tinnitus or numb tongue? These symptoms all surfaced in December of 2014. A mri showed a small pituitary cyst………only 2% of the population have such. So I am now waiting for the blood panel results. I was self directed to find out what was happening……I DID NOT AGREE WITH THE NEUROLOGISTS THAT THIS WAS JUST ANXIETY. I informed them I was in a marriage breakup, not a GOOD IDEA to tell them what goes on personally BECAUSE All symptoms can be blamed on anxiety??

I loved, Loved, LOVED this post...all of it...and certainly the list of your past shenanigans. It made me want to compile my own. Ii agree completely with Mike. And then you topped it off with the John Prine piece, those well-used vocal cords of his buzzing right past all guards at the emotional doors.

I read all U wrote and I get it. ErikaB here it started as RR now it has progressed to SPMS. I finally get RR is just a temporary thing that after years it can progress..for me SPMS. I have asked what is next...Yes, cancer

Cancer would be better. Oh well, it is what it is... I would love to live where I can get Stem Treatment. Money is key, I don't have any I would move and try it. Oh well, I will end with I am so glad I love Christ and I know He loves me. SPMS is no joke everything that happed with RRMS continued and was worse times 100...

Cancer would be better. Oh well, it is what it is... I would love to live where I can get Stem Treatment. Money is key, I don't have any I would move and try it. Oh well, I will end with I am so glad I love Christ and I know He loves me. SPMS is no joke everything that happed with RRMS continued and was worse times 100...

Thanks for contributing your comments. Even with all of the new treatments, many patients with RRMS still do progress to SPMS. Hopefully, with researchers finally starting to really look at progressive MS, some answers will be on the horizon.

Researching stem cells is certainly hopeful, but please be aware that this type of treatment is still very experimental. It's important to not let hype the clips hope, and remember there are unscrupulous people out there who are more than willing to take the money of desperate patients, offering miracle cures with very little basis in science. Not saying that all of the stem cell operations are scams, but please be careful, as, like I said, this is all still very experimental even in the hands of the best intentioned practitioners…

Necro here. Your song choice was beautiful. I am turning 60 in a few days, getting old isn't easy and it is much harder with PPMS. I too go over my glory days past. From what you wrote you had good times, me too. At least we tore up the town at one time. Some people can't say that, those people I feel sorry for.

Hi, necro. Funny, I always say that I have many more regrets over the things I didn't do than the things I did do. I certainly managed my share of hijinks, but only now do I realize the truth in the old adage that one should live each day as if it will be there last.

Glad to hear that you had your good times, too. And, yes, I do feel bad for those who played it too close to the vest…

I have never felt that what people see when they look at me matched my own self-image. Most people don't look beyond clothes, skin color, maybe jewelry. And wheelchairs. The only way to really see someone is to talk with them. Or read what they've written. I would enjoy sitting down with you and a coupla beers/bourbon/coffee/whatever you're drinking and hearing your stories.

It is unfortunate that most people don't take the time to look beyond the surface when interacting with other folks. Having found myself living in a place in which I felt like I was a stranger (Florida), I soon learned that you truly can't judge a book by its cover. Most people are full of surprises, if you give them the chance to surprise you.

Would love to swap stories over a few rounds of drinks, unfortunately these days alcohol doesn't play well with my frazzled nervous system. Major, major bummer…

Marc, I’ve not been by in a very long time, I’m grateful I stopped by today. Your memories, observations, deep and honest reflections, reverberate upon my heartstrings, through my bones, resonate with my own different and shared lived experiences; shamati, I hear you. I suppose all of us stopping by to read this post do. Thank you for expressing the reality of being "in there," here. No matter how worn out and broken our bodies become, whether young and shattered by illness or old and tattered by time (should one be blessed to live a long life), mind clear or muddled, the soul within remains intact, complete, whole.

Hi Laura, thanks so much for stopping by. And for your very well stated sentiments. The essence of a person is very hard to break, despite the tribulations they may suffer. Just think of the people who spent years at Auschwitz, on me to come out and rebuild their lives despite having literally gone through hell. The human spirit is amazing…

I know.... I'm late on the bus! 19 comments already! Just wanted to say brilliant. I absolutely love your writing. I am in hopes that someday your blog will be in history books about a race of people who populated the earth calling themselves "innovative miscreants". Not MS slaughtered, but MS proud.

I love you as a writer, just brilliant. I love you for your expressed raw truths. I love you because you have given me an idea on how to make my son's day a little brighter. THANK YOU. I love who you are and the powerful way you empower those of us who are lost, giving us HOPE, not of getting well but of getting better as a human being. THANK YOU MARC.

I love you as a writer, just brilliant. I love you for your expressed raw truths. I love you because you have given me an idea on how to make my son's day a little brighter. THANK YOU. I love who you are and the powerful way you empower those of us who are lost, giving us HOPE, not of getting well but of getting better as a human being. THANK YOU MARC.

Your writing inspires many us - keep doing good. I have twin brothers, farmer's sons, 55 years old who should be in the prime of their lives but are cut down by MS and fighting the wheelchair existence - good and bad. I hope you realize how your words can show a better way to focus on "extraordinary" thoughts rather than disabilities. Yes, your song is about them, too, their "glory days" long gone.

So glad you appreciated the post, and enjoyed the song. I first heard that song maybe 10 years ago, and while writing the post it just occurred to me how appropriate John Prine's tune would be as a capstone for my essay. Happy to see that others agree…

Debbie, much appreciated. I'm so tired of the BS associated with much of what is "understood" about MS by the general public. Guess I'm just trying to express truths that need to be expressed, because people really need to know that despite advances, MS is still a terrible beast to be reckoned with. Thanks again…

There's one more thing that you can add to your list of accomplishments; you inspired this ppms'er to visit New York. I've been in a wheelchair now for ten years. About five years ago, I realized that there is this whole world out there that I wanted to experience. I also realized that my traveling days are numbered, and if I wanted to see it, I better get going. But New York? It's way too crowded for me to get around in a wheelchair, right? Then I discovered your videos. I quickly learned the secret: put your chair in high gear and punch it! As long as you act as if you're late for something, you blend right in. We just returned on Tuesday from our second trip to NYC in the last year. Our first trip lasted a week, but we ran out of time to see everything so we went back. Now I realize that missing New York would have been a big mistake. Not only would I have missed it, but my wife also. (I too am married to one of those Angels.). So there you go; that's another accomplishment that you should be proud of. Please keep sharing your life with us. You're doing something very important here.

Hi Brian, so happy that you were able to make it to NYC, and from the sounds of it, seems like you figure out just how to act like a native New Yorker. I must admit to being a little bit too reckless with my wheelchair, at times, as I've almost taken out a few pedestrians through the years. These days I'm just a little bit more mellow, especially on busier streets. Still, I think a lot of my fellow residents of Gotham get a kick out of seeing me whiz by them, as long as I haven't taken out a shinbone in the process… Thanks so much for your comment…

Marc,I was diagnosed with PPMS in 2002 so I've got a few months on you. I use a scooter anytime I'm out of my house but can still hobble slowly using a walker at home. I'm very lucky that it has not progressed any faster than it has. I'm reminded to be grateful for my lack of progression every time I read your posts.I read your posts since the beginning and always look forward to the next one.You amaze me every time you post. I know you are constantly dealing with physical and emotional pain way beyond anything I deal with. Yet your posts are so brilliantly composed with knowledge, deep emotional incite, and humor. You make me want to push myself to do more.You are an inspiration to all of us.Thanks, JimPS I did a lot of exercising before MS. I liked your comment on swimming a mile a day. The only thing I can still do is swim. The legs just come along for the ride.

Thanks Marc for sharing just a little glimpse of your life with us in a nutshell (as the saying goes).Reading your words that express what so many of us feel brings much comfort - thank you! As well as reading the comments from fellow ms'ers. Just makes this journey a little less lonely.

Thank you Marc, for once again expressing so clearly what this fellow MSer/wheelchair prisoner is feeling, but unable to put into words. Also, thank you for providing us a glimpse of your earlier life. All your experiences, both good and bad, have molded you into the wonderful human being you are today. We see you.Joan

I enjoyed your blog and love the honesty you wrote about living with MS. I've had RRMS for 22yrs now, I was 15 when I developed my first exacerbation. However, not dismissed for ten long years. I know how lonely it feels when you may look "NORMAL" but inside your so sick. I chose to be positive about my illness and use my knowledge to educate others as well. I hope to read more from you soon, this blog touched my heart. Just knowing someone else gets it can make all the difference. Take care Stephanie

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Regretfully, due to the high volume of e-mail received and the realities of living with progressive MS, I'll no longer be able to respond to all e-mails sent. I do read each note, and will do my best to answer as many messages as I can.

About Me

I'm Marc, a 53-year-old male, living in New York City with my lovely and wonderful wife Karen. Diagnosed with Primary Progressive Multiple Sclerosis in March of 2003, I now require a wheelchair to get around the city. I like to drive the wheelchair at full speed, thus the moniker "Wheelchair Kamikaze". I've managed to rig a camera to my chair, so I'm able to take videos and still photos from the unique vantage point of a wheelchair, which I intend to post here.
Before getting sick, I was the Director of DVD Production for one of the major international music companies. Yes, I was once a member of the Evil Empire...
Prior to my enlistment in the Evil Empire, I worked as a video producer and editor.
I grew up in New York City, and spent the 1980s in Boston (college and postcollege rock 'n roll craziness). During the 1990s, I lived in South Florida, until I woke up one morning and realized I was living in South Florida, came to my senses, and moved back to New York.
I hope you like my blog...